By TARA PARKER-POPE – NY Times
December 20, 2013
MEMPHIS — After her doctor told her two months ago that she had breast cancer, Debrah Reid, a 58-year-old dance teacher, drove straight to a funeral home. She began planning a burial with the funeral director and his wife, even requesting a pink coffin.
Sensing something was amiss, the funeral director, Edmund Ford, paused. “Who is this for?” he asked. Ms. Reid replied quietly, “It’s for me.”
Aghast, Mr. Ford’s wife, Myrna, quickly put a stop to the purchase. “Get on out of here,” she said, urging Ms. Reid to return to her doctor and seek treatment. Despondent, Ms. Reid instead headed to her church to talk to her pastor.
“I was just going to sit down and die,” she says.
Like many other African-American women in Memphis and around the country, Ms. Reid learned about her breast cancer after it had already reached an advanced stage, making it difficult to treat and reducing her odds of survival. Her story reflects one of the most troubling disparities in American health care. Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women.
The cancer divide between black women and white women in the United States is as entrenched as it is startling. In the 1980s, breast cancer survival rates for the two were nearly identical. But since 1991, as improvements in screening and treatment came into use, the gap has widened, with no signs of abating. Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.
And Memphis is the deadliest major American city for African-American women with breast cancer. Black women with the disease here are more than twice as likely to die of it than white women.
“The big change in the 1990s was advances in care that were widely available in early detection and treatment,” said Steven Whitman, director of the Sinai Urban Health Institute in Chicago. “White women gained access to those advances, and black women didn’t.”
Over all, black women with a breast cancer diagnosis will die three years sooner than their white counterparts. While nearly 70 percent of white women live at least five years after diagnosis, only 56 percent of black women do. And some research suggests that institutions providing mammograms mainly to black patients miss as many as half of breast cancers compared with the expected detection rates at academic hospitals.
The gap in cancer survival cannot be explained away by biological differences in cancer between blacks and whites, researchers say. While African-American women are at greater risk of a more aggressive form of cancer known as triple negative, those cancers account for only about 10 percent of diagnoses.
Researchers from the Sinai Institute last year analyzed breast cancer cases in the country’s 25 largest cities and found that African-American women with breast cancer were, on average, 40 percent more likely to die of their disease than white women. In the United States, the disparity in breast cancer survival translates to about 1,700 additional deaths each year — or about five more black women dying every day.
Many Health Issues
News that Memphis has the widest survival gap between black and white hit the medical community here hard. When the breast cancer disparity study was published in the journal Cancer Epidemiology last year, Edward Rafalski was one of the first here to read it. He is senior vice president for strategic planning at Methodist Le Bonheur Healthcare, which operates eight hospitals in the Memphis area.
As it happened, Dr. Rafalski had previously worked at Mount Sinai Hospital in Chicago and knew the study’s lead author, Dr. Whitman of the Sinai Institute. As local headlines declared the city’s troubling record, Dr. Rafalski invited Dr. Whitman to the city. Memphis, population 655,000, is more than two-thirds black, and more than a quarter of its residents are poor.
“When you look at any epidemiological study, Memphis is often the epicenter of virtually any disease, be it diabetes, heart failure — there are a lot of health issues here,” Dr. Rafalski said. “But for breast cancer to be as bad as it is — that’s why everyone came to the table and said, ‘We have to do something.’ ”
Dr. Whitman flew to Memphis for a strategy session. The study’s co-author, Marc Hurlbert of the Avon Breast Cancer Crusade, which funded the research, joined the conference by phone.
The solution, everyone agreed, would not be simple. Doctors and health care researchers say the reasons behind the black-white cancer divide are complex. Economic disparities that disproportionately affect African-Americans explain some of it. Years of racial discrimination and distrust of the medical establishment dating back to the Tuskegee, Ala., syphilis experiments on black men in the 1930s continue to influence health decisions made by African-American families in the South.
Lack of health insurance among low-income and self-employed women was also cited as an obstacle to timely care, a problem that may be eased if some of them gain insurance through the Affordable Care Act.
Black women often arrive at the hospital with cancers so advanced, they rival the late-stage disease that doctors see among women in developing nations. A study based on Medicare records published in July in JAMA, the Journal of the American Medical Association, found that 20 percent of African-American women with breast cancer did not learn of their disease until it had advanced to Stage 3 or 4. By comparison, only 11 percent of white women learn at late stages.
Doctors in Memphis and in cities around the country tell horrific stories of poor and uneducated patients, black and white, who arrive at the clinics with festering tumors or a breast that has been all but consumed by a growing cancer.
With a grant from the Avon Breast Cancer Foundation, researchers at the Methodist system analyzed their records of breast cancer patients and discovered that even in what is widely viewed as the top hospital system in the region, black patients took on average about a month longer to begin treatment after diagnosis compared with white patients.
“A large percentage of our African-American population is also poor, and poor people don’t have the luxury of being sick,” said Dr. Kurt Tauer, an oncologist with the West Cancer Clinic, which is affiliated with the Methodist system. “They have to take off work, find someone to give them a ride.”
But the larger issue, hospital officials say, is that many black women in Memphis do not seek health care at all. They do not undergo mammograms for screening or see a doctor when the earliest signs of breast cancer develop. Even among women with Medicare coverage, black women were significantly less likely than white women to have seen a primary care doctor in the six to 18 months before diagnosis, and also had far lower rates of breast cancer screening — 23.5 percent in that period, compared with 35.7 percent of white women, the JAMA study found.
The challenge is to get women screened and treated in good time. But how, the Methodist officials asked, do you reach African-American women who have felt excluded from the health care system for most of their lives?
Spreading the Word
It is often said that there is a church on every street corner in Memphis. In a half-mile stretch of Elvis Presley Boulevard, there are six: the Faith Temple Holiness Church, the Holmes Road Church of Christ, the CME Temple Christian Methodist Church, the Lily of the Valley Church of God in Christ, Our Savior Lutheran Church and the Holy Spring Baptist Church. Methodist hospital system officials estimate there are 3,000 to 4,000 churches in the area they serve.
“Our patients